After disabling surgery, young chess player works to keep epilepsy in check

Nine-year-old Griffin McConnell peers at the chess board with brown saucer-eyes beneath a driving cap tilted at a rakish angle. His right arm hangs in his lap. The newly dominant left makes his moves.

For nearly an hour he shifts in his wheelchair, locked in a cerebral battle of attrition against an opponent four years older. Just a few pieces remain when Griffin finally surveys the board and heaves a deep sigh that settles into a trace of a grin.

"Dead...meat," he says softly, pointing a thumb at himself and acknowledging defeat.

A loss, but a step forward.

Hackberry Hill Elementary student Griffin McConnell gets a high-five from schoolmate and friend Lauren Swanback, 9, on the playground in Arvada on Nov. 15. Para-educator Pam Olmstead keeps a close eye on Griffin, who has to wear a helmet to protect himself while at recess. (Andy Cross, The Denver Post)

A little more than six months ago, doctors essentially disconnected one half of his brain, a drastic measure performed in hope of halting his increasingly frequent and severe epileptic seizures. The procedure, which offered no guarantee of success, came with a trade-off: an active kid and gifted student would emerge with physical and cognitive disabilities.

And yet, here Griffin sits in a converted meeting room of a Denver hotel, facing off against a series of opponents in a youth chess tournament created by his father, 48-year-old Kevin McConnell, largely to provide an outlet for his son's passion and to nurture a slow, uncertain recovery.

Griffin's chess skills have remained intact. In fact, he has improved his official rating, in the process revealing a determination untouched by the surgery.

Against tough opponents, he patiently grinds out each move. Perhaps most significantly, he pushes himself to gauge his progress.

He could have played in this tournament at his school grade level, and very likely come away with a trophy. But a few days earlier at the family's Westminster home, when his dad asked if he'd rather play against his age group than among more seasoned, rated players, he quickly rejected the idea.

Griffin shakes hands with chess competitor Stephen Chen at the start of another tournament game at the Ramada Inn in Northglenn on Nov. 16. Griffin's chess skills have remained intact. In fact, he has improved his official rating, which reveals a determination untouched by the surgery. (Andy Cross, The Denver Post)

In a characteristic combination of speech and gesture, Griffin emphatically carved an X in the air with his left hand while grunting his disapproval.

"Play rated," he insisted. "Easy, no learn."

* * *

From early on, Griffin McConnell made it clear he would be a voracious learner.

By age 3 he was reading and soliciting math problems from his dad. At 4, while father and son explored a collection of board games, he asked about chess.

Kevin, who hadn't played in decades, explained how the various pieces moved. Griffin, a visual learner attuned to spatial relationships — typical "right-brain" functions — proved a natural.

Griffin gestures while contemplating his next move in a game during a chess tournament at the Ramada Inn in Northglenn, Saturday morning, November 16, 2013. (Andy Cross, The Denver Post)

At 5, he competed in his first scholastic tournament — and won.

But around the same time Griffin became engaged by chess, interludes of erratic behavior began to interrupt the progression.

His mom, Kori, felt something was amiss one day when Griffin wouldn't get out of his car seat. He just sat there, picking at his shirt. When Kori removed him from the car, he looked dazed.

Suspecting the incident pointed beyond a simple behavioral issue, she did some Internet research and announced her findings to her husband.

"I think Griffin had a seizure today," Kori said.

"You're just being an over-worried mom," Kevin assured her.

Para-educator Pam Olmstead works with Griffin McConnell on an assignment for class at Hackberry Hill Elementary's library. Since the fourth-grader has returned to school, he has seen marked improvement in all phases of his recovery. He undergoes weekly physical and speech therapy, but it is playing chess that builds his confidence and wins the respect of his peers. (Andy Cross, The Denver Post)

Subsequent episodes led them to consult doctors at Children's Hospital Colorado who diagnosed Griffin as having mild epilepsy. What sometimes appeared to be odd behaviors were, in fact, partial seizures. With medication, he'd eventually outgrow them.

But the condition grew worse as Griffin's brain rebelled against nine different prescriptions. His behavior within the seizures changed.

"One time, piggy bank...smash!" Griffin says, recounting an episode in which he broke nearly everything in the bedroom he shared with his brother.

Sometimes, the behavior would go on for hours.

"That's the side of epilepsy that was more horrific than anything else — the behavior," says Kori. "It was the sobbing little boy that said, 'I didn't mean to act like that, I didn't meant to break the piggy bank.' "

Grand mal seizures became regular occurrences and the McConnells worried not only for Griffin, but for whether the most violent seizures might put his two younger siblings, 7-year-old Sullivan and 3-year-old Moira, at risk.

"Looked like I'm mean," says Griffin, describing the worst of his episodes. "But I'm not mean."

Griffin underwent the first of two related surgeries in April of 2012 at Children's, as doctors focused on his left frontal lobe by implanting a grid to map the brain with about 200 electrodes to determine the source of his seizures.

About a week later, the second surgery removed some tissue in the hope that it contained the troubled area. The results were promising as the seizures stopped — for six days. Then they returned "with a vengeance," Kevin recalls.

In January, another series of scans revealed significant atrophy in the left side of Griffin's brain. The medical staff at Children's debated possible courses of action, including a radical surgery called a hemispherectomy.

Performed to thwart seizure disorders when medication and less invasive surgeries have failed, the procedure involves either removing or disabling one cerebral hemisphere.

Often, the remaining half eventually takes over some functions lost in the surgery. In Griffin's case, disconnecting the left hemisphere would disable his right side's motor skills and almost certainly his speech. That latter concern, in particular, made the surgery a subject of heated debate among the medical staff.

Meanwhile, Griffin's quality of life, as well as his cognitive development, already had begun to deteriorate markedly as grand mal seizures, and sometimes violent behavior, gripped him dozens of times a month.

But heading into the surgery as a high-functioning kid, a gifted-and-talented student, Griffin had more to lose than most candidates for the procedure. His age put him in a gray area of language development that presented a higher risk that he would lose it all.

And still, the chances that the procedure would halt his seizures stood at only about 60 percent, the McConnells were told.

"That," Kori says, "was a troubling number to hear."

As the decision on whether to schedule the surgery loomed over the family, Griffin entered the state chess tournament. In the midst of his last match, he suffered a seizure.

Kevin grabbed his son and held him on a couch while the seizure ran its course. Several minutes later, Griffin insisted he felt ready to resume. Gripping his rook, the piece that moves freely either forward or laterally, he started to move it diagonally, like a bishop.

After Griffin's second failed attempt to make a legal move, Kevin broke down as he stepped forward and forfeited the match on his son's behalf.

"Tired," Griffin recalls.

"I think he was confused," says Kevin. "He didn't understand why I was forfeiting the game for him. He totally thought he was capable of playing. But he just wasn't."

That moment among others ultimately persuaded the McConnells not only to have Griffin undergo the surgery, but to move it up a month to May 3.

"At that point," says Kevin, "we had to do something to give him a chance to live. It wasn't just the violence. He was becoming catatonic during the day."

His world narrowed. He could no longer attend school. He couldn't read. He would watch movies on video, but only three, over and over: Home Alone 2, Matilda and Groundhog Day.

Ultimately, the procedure was not a hard sell when Kevin and Kori broached it with Griffin about 10 days ahead of schedule. They had promised him the first surgery would eliminate the seizures — a parental miscalculation they would not repeat — and so this time emphasized that disconnecting half his brain offered the "best chance" to stop them.

"If the seizures will be gone," Griffin told them, "you can take it all."

Sitting at the kitchen table, he became upset only when his parents explained that he wouldn't be able to throw the football or draw with his right hand.

"At that point," Kevin recalls, "he decided to try something. He got a piece of paper and drew a picture of a water bottle that was sitting on the table with his left hand — just to prove to us, or himself, that he could do that."

Logically, Kevin and Kori agreed the 9-hour procedure was the right choice, the only real choice. Emotionally, they carried doubts all the way to the operating room.

"Knowing that your child is going to have a hemispherectomy is, to me, analogous to knowing they're going to be in a horrible car wreck but you have advance knowledge of the day and date," Kevin says. "You don't know what the outcome is going to be, but you know exactly when it's going to happen."

About 10 days after the surgery, Griffin sat in his bed at Children's with an IV hooked up to his arm and another tube snaking from his head to drain fluid.

With his left hand, the only one that would function, he pointed toward a chess set his father had brought to the room more as a token of hope than anything else.

Griffin wanted to play.

On a portable table that was too small, with motor skills that still lagged, he attempted his first informal match since doctors disconnected the left side of his brain. He moved all the pieces correctly, except when he occasionally confused the paths of his knights and bishops.

He remains a little fuzzy on the outcome.

"Draw?" Griffin asks.

Actually, it was a win for his dad — but a fleeting triumph as Griffin would soon start to beat him regularly.

"That is pretty surprising," says Brent O'Neill, the pediatric neurosurgeon who performed the operation. "That's usually the point where kids feel a little bit better but start to work on some basic things like just walking and getting to a sitting position. For him to be playing chess that early on is impressive."

O'Neill removed about 25 percent of the cortex in Griffin's left hemisphere and disconnected the rest from the right hemisphere. The subsequent pathology report showed an unusual combination of cortical dysplasia — a relatively common, congenital jumbling of brain cells that triggers epilepsy — and Rasmussen's Syndrome, a progressive autoimmune disease that causes tissue to atrophy and could have done further damage if not for the surgery.

The two conditions occur together very rarely, with perhaps two dozen recorded cases in world medical literature, O'Neill says. Considering what doctors now know about Griffin's condition, the surgery appears to have been the right call.

Now, Griffin's parents talk about him being reborn — partly a reference to his emergence from the shadow of medical uncertainty, partly a nod to the fact that, like an infant, he's having to relearn some basic skills.

The seizures have stopped. It has been more than six months now, and while there are no guarantees, this has been a promising development.

Assessing lost function remains an ongoing process.

Peripheral vision on his right side may well be gone forever. He'll never again be right-handed or able to perform fine motor skills like drawing, which he did prolifically, with that hand. And while he can walk, even run, with a pronounced limp, he often uses a wheelchair to alleviate stability issues.

Language, the part of Griffin that seemed most at risk from the surgery, has been coming back in fits and starts. Some words flow easily, while others rattle awkwardly around his mouth until he manages raw approximations.

He undergoes speech and physical therapy each week, and has returned to fourth grade at Hackberry Hill Elementary in Arvada — an event that triggered marked improvement in all phases of his recovery. He has always thrived in social settings, a trend that continues among a warm-hearted student body and staff.

And while his precise cognitive baseline won't be determined for at least a year or more, Griffin's parents have come to regard time at school as a therapy all its own.

"He's really tired when he comes home," says Kevin, "but his verbal skills have taken a tremendous leap."

* * *

As the final matches of the chess tournament get under way, it already has been a long, tiring day for Griffin. But what initially looks like a lull of fatigue and indifference soon reveals itself as something else entirely.

In short order, a rapid exchange of pieces morphs into a one-sided affair, with Griffin dictating the pace and direction. A couple of strategic lapses by his opponent give him all the opening he needs.

Griffin fairly quickly achieves checkmate and offers his left hand in the traditional show of sportsmanship.

Doctors speak in general terms about the benefit of right-brain exercise like chess to Griffin's rehabilitation from surgery that disconnected the left half of his brain. His dad sees the game playing a fundamental role, both in hastening his recovery and in ways that transcend cognitive function.

"His mind can be unfettered," Kevin says. "His physical limitations are not at all at play. I think it's incredibly freeing for him to be able to do something really well, and know those kids he played against, when they're done — win or lose — they respected him."

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